middle age

[katiamarie]

I am 56 yrs old and recently diagnosed with 6mm chiari found on mri after I had problems with stumbling several bad falls,weakness numb Arms difficulty walking.  My legs feel like rubber sometimes. My internist said I have an extra heart beat but said chiari is common finding and none of these sx are bc of chiari . I have been researching this and i asked for referral for neurologist. I have to wait 2 mos. I am worried no history of illness but I dont think my internist is aware of what this is and the implications or am I over reacting? I am older and worried something bad is about to happen. I am usually happy go lucky type but now not feeling that so much.  I think my dr thinks I am overreacting didnt seem to want to refer me.  Is there anyone that found this diagnosis so late in life and if so what happened? Am I overreacting I had to get firm and dont want to go back to this dr .but now feeling that by me asking ihas made my internist testy with me and not sure where I stand with him.  

[katiamarie]

Thank you Selma thank you!

[selmaS]

  I will tell u a secret....lol...I told my DH that I felt like I was losing my mind for 2 yrs b4 I got my DX, so I know just how u feel....I had symptoms on and off my whole life, and Drs were only giving pain meds and telling me it was anxiety...ugh...it can be frustrating...and will continue to be frustrating as u may see Drs that will say it is find, nothing to worry about, u had it ur whole life etc....ignore them especially if u r having symptoms u can not ignore.

[katiamarie]

God bless you Selma you gave me direction and important  information so that I can find the right dr .  I feel better now not losing my mind about the symptoms!  

[selmaS]

  I can answer a few of ur questions....u can have a good day after a bad day bcuz Chiari cycles.,..u can have a few good months...and then a few bad....

If a Dr specializes in Chiari it will say in the profile...a Chiari specialist does research in chiari and only treats chiari and chiari related conditions...they will test for Ehlers-Danlos, ICP, POTS, tethered cord, syringomyelia...etc....

Will Chiari always progress...no...and sometimes it may progress very slowly and it can progress very rapidly too.

We do have a list of Drs in the Health Pages u can use as a tool to research Drs,,...it is best to educate urself as to what a Dr should be looking for, and then meet a few and go with the one u feel is best for u.

[katiamarie]

Your response helps me to relax a bit. I am going to mayo was told they all know chiari in that dept.  I am not wanting surgery just want answers like will this always progress?  Why do I have days that I can hardly mKe my feet move and then be normal.  How do I know whether dr specializes in this ?  I did ask but their profile sounds more like they specialize in dementia?  

[selmaS]

Hi and welcome to the Chiari forum.

Many of us are older, I was 48 when finally DX'd and it was a few months b4 I turned 50 when I had surgery....it is quite common for us to be older as there was no way to DX this when we were younger.....as MRI's were not around and when they did come into use the expense was so high, they were not used for DXing issues like this...it was more for cancer.

B4 u get all stressed thinking u need surgery, find a NS that is a Chiari specialist and get more testing...a CINE MRI to see if u have a CSF obstruction, and then more MRI's of ur spine to look for other related conditions.

Not everyone with Chiari will need surgery,,,,so take a deep breath and remember to exhale...oh and request copies of ALL testing u have and had,

Know that u r not alone : )